I'm sorry this post is rather long (I can hear you all saying 'as usual'!) but it might help some here with the tricky topic of how to deal with the emotional implications of PMR/GCA: or, for that matter, any other life-changing illness or situation.

First, the usual Disclaimer! Although I am not a qualified Psychologist, I was fortunate to study Change, Personality Theory and Counselling Psychology many years ago whilst at Uni, and in my professional work I’m invariably dealing with people in some kind of Change process. So, I hope this post brings some personal insights into the Human side of, as well as some practical strategies for dealing with the emotional side of Change in the context of chronic illness especially. As always, I am very open to dialogue about, and alternative perspectives around this complex and, for many, very personal topic.

Change, and the Human Condition..

As we all know, like night and day, Change is inevitable in Life! But a sudden and unwelcome change in our physical health, daily capabilities, self-concept and future expectations can be as psychologically and emotionally demanding as nearly anything else that we are likely to encounter along the way. And, as many of you say, dealing with Uncertainty around these things can be the most emotionally challenging and stressful experience of all. PMR/GCA places Uncertainty directly at our feet and says to us: 'Go on then, try me out!'

Does our Personality Type affect how we cope with major Illness?

In my books, of course it does! Without going into Psychobabble (!), it is generally acknowledged by Behavioural Psychologists that our inherent, unique Personality Type (if you like, our personality ‘profile’) can influence many aspects of how we perceive and approach life, work, relationships, and Change itself.

Here, I’ll just set out a very rough ‘sketch’ of a model of Personality Types that has its foundations in early 20th Century (Jungian) Psychology, and is widely used in various forms in helping People and Organisations to understand one of the greatest questions for humanity: what makes people ‘tick’ differently, what motivates us, and how we deal with life’s challenges.

This comes with the rider that even the most modern forms of ‘Typology’ are still far from an exact or predictable science, and there are many other (e.g.) environmental, social and cultural factors that can influence our Personality or Behavioural ‘Style’ in context. Also, we are all a mixture of ‘Styles’ in differing proportions: some of us ‘stronger’ in one / less pronounced in others, some of us ‘all rounders’. That’s what makes life and people so interesting - if, at times, also frustrating!

So, nothing here is meant in an 'absolute' sense, nor necessarily scientifically / empirically provable. It is only my interpretation based on many years of working with people in Change in many contexts - and of course, learning about myself along the way, also!

Of course, ALL of the above ‘Types’ can experience ALL of the above Coping Challenges: no single Challenge is exclusive to a particular Personality Type! However, to my logic (and based on experience), it’s likely that different Types are likely to experience differing reactions (challenges) to Change, and also respond better to differing Coping Strategies. Therefore, it can help to know which strategy is more likely to be successful, given the combination of your Personality Type and the type of Emotional Challenge you are experiencing in the Change Process. 'Knowing Yourself.. and all that?!

Moving on to The Emotional Journey in Change..

Whichever of the 4 Personality Types you most closely identify with (or even if you don’t identify with any of them!) this leads me on to the Kubler-Ross model in managing and coping with Change - which I’m sure some of you will already know, and many will relate in one context or another.

Dr. Elisabeth Kubler-Ross (rip) was a ground-breaking Swiss Psychiatrist who studied and documented her experiences in dealing with the emotional journey of patients with terminal illness (she did her first work of this kind in the 1970's, I think). She went on to publish several internationally acclaimed books about the emotional journey / process that, almost universally, her patients went through in coming to terms with Change and Grief in the most profound circumstances of all. Her stories are incredibly poignant, and her concept of the emotional stages in the journey (very basically, 'Shock, Anger, Denial, Negotiation, Acceptance') is almost universally transferable into any Change situation, from the mundane to the major.

I'm laughing as I write this: today, I discovered a flat tyre on my car and the Kubler-Ross reaction kicked-in without my realising it. First reaction was to say 'B****r! (shock). Then, 'The garage sold me a bad tyre' (displaced anger). Then, kick the tyre. 'No, it's ok really, the pressure is just a bit low' (denial). Then, 'Maybe I don't check my tyres often enough?' (honest negotiation with self). Then, 'Ok, so the tyre is as flat as a pancake. Either way, I need to call the Rescue Service and get mobile again' (acceptance / asking for help / moving forwards).

On a serious note: the most interesting (and possibly important?) thing about the Kubler-Ross model is that it suggests that we often find our most productive emotional and practical resources at the (later) 'Acceptance' stage in the Change process. This is when we are more likely to think more clearly, rationally (and possibly, also, creatively ?) about solutions to the way forwards in Change (for ourselves / others), and to let-go of some of the naturally powerful but potentially self-restricting emotions in the process. In my experience, this is also the stage where we can truly 'let others-in' (e.g. our nearest and dearest) to our emotions, hopes (and fears..) so that they can help and support us as much emotionally as practically - as they usually want to do but might have been afraid to before, due to (for some of us, at least) the need to always be 'in control' (!).

Give in, Give up.. or Roll With It?

'Giving-in' and 'Giving-up' are two different things, as I'm sure we will all have said to others in our lives when supporting them through a crisis? Yes, Despair, Depression, and a feeling of wanting to 'Give-up' can be Hell :-(. I have been on this journey too, in a past, difficult chapter in my life. Along the way, I learned and still try to use the Survival Philosophy of 'Rolling with it' as a more gentle interpretation of 'Giving-in (or up)' and it helped me immensely in getting through a few tough years of massive Change and Challenge at all levels.

Coping - A Battle, or a Game?

Many people mention the idea of 'battling / fighting' with PMR - I can well-relate. How about thinking of 'PMR vs. You' as a game, more than a fight, where (a bit like the boxer Mohammed Ali (again, sadly, rip) you develop a strategy of holding-back, laying low, and waiting until PMR eases back on its ferocious punches and you regain some feeling of control once again? Yes, it's a day-by-day process: but 'Baby Steps' are often best in making big Behavioural Changes: and, as many here say, Patience is Key. Easier for some Personality Types than others?!...

Coping - Have Faith in Yourself?

Confidence in our abilities, mental and physical resources, and our self concept (Who I Am) can be one of the greatest casualties of a life changing illness or injury: and this bit of our identity is invariably challenged by the Change Process itself.

Finally, the simple words 'Don't worry, things will be ok' can, for many of us, be a powerful part of the coping process. I'm not a particularly religious or spiritual person, but Faith in Yourself can also be a big factor in coping with major Change: or at least the process of accepting it. And there's another up-side: the process of major External Change can often force us to find Internal emotional, practical and creative / intellectual resources / talents that we had overlooked in ourselves before.

All of reminds me of the old saying: 'what doesn't kill you makes you stronger'. Work in Progress for some of us?!

Now, after all of this serious intellectual stuff, my mind is already turning back to more, mischievous John Wayne stories. In terms of coping strategies, Laughter is one of the best for me

With best thoughts and hopes

MB

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Very interesting reading, as all your posts are. As you say lots of us, myself included can probably relate to some aspects in all Types. But I would say I'm more in the DOERS and SUPPORTERS - if that's not a contradiction.

However, I do think that Acceptance is one of the most important things that affects how we deal with most situations. Some may question what is happening much more than others, but if we don't accept the situation, then I don't think we can move on.

I come from a long line of very strong willed woman, many of whom didn't have easy lives, but survived to tell their tales. Glad to say, that fortitude is continuing in daughter and nieces, but one thing in common throughout the generations is an acceptance of their lot, and getting on with life and making the most if it.

I won't bore you with details, but many lost sons or husbands too soon, including my sister. I partially lost my sight with GCA, could have given up, and said, can't do anything! Not my style.

Over the last 20 years, nearly lost my husband three times, he certainly wasn't expected to recover 1st time around, but he did. He eventually died three years ago, and I could have given up again, but he knew I wouldn't, if fact told me not to in no uncertain terms!

What got us through all our married life, which was eventful in many ways, was a sense of humour, and an acceptance to get on with life. One of his favourite sayings was 'you have to play the cards you're dealt', and that so true. Life is all about change, some good, some bad, so why waste time and energy on trying to fight it.

Thanks DorsetLady, I agree with you and it's always interesting to hear how people have developed their philosophy in life. You sound like you've had quite a journey! And, 'just get on with it' - as nothing in life comes with any guarantees.

I'm a bit mentally whacked now after a couple of hours of serious thinking and writing my latest 'epic' (!), so am off out for some fresh air and gentle retail therapy (supermarket, charity shop, TK Maxx etc). What an exciting life!

Well, the physical challenges of PMR have at least re-focused me on using my mind and intellect (and naughty SOH, although arguably to some) to push forward with the creative writing that I've always wanted to do.

I can't easily express how valuable your feedback (and that of others' here) is to my ramblings, in the process

Just unwrapped a cane rocking chair (call me Grandma, but not to to my face if you wanna live ). Had a workout popping the bubble wrap and unraveling the copious amounts of paper, and don't mention fighting the cardboard box it came in. So in the garden with a cuppa and the crossword! ☕️🤔

Something Out There must know where I stand, I don't seem to fit in any of the types there so I must be an 'all-rounder'. I entirely agree that one's own life experience will shape the reaction to any situation/change but I know my salvation came in the fact that I am a bookworm and come from a long line of bookworms. Escapism at it's best! I am so grateful that both my daughters are bookworms too, we can all relate to each other as we have the same reaction to any sign of a crisis - find a book.

Of course we will all help if the crisis is immediate and there is something we can emotionally or physically do, but if there is nothing to be done, then why waste energy in thinking/worrying over the situation? Leave it be until there is a handle to grab hold of and turn.

And as far as John Wayne is concerned, do your best swagger around TK Maxx. Either no one will notice, or you will be politely escorted off the premises. I know about making lemonade if life throws you lemons, but if life is boring, make it happen!

I know, not everyone 'fits' into or can relate to any of the Types, they're just a reference / talking point. The science (advisedly named) of Personality Typology and testing is notoriously unreliable and very difficult to validate empirically, despite what some of the big commercial providers will tell you. In my opinion, at best it only gives a guide to a person's broad behavioural type in a particular context. At work, I use the generic model to generate dialogue about Personality Tendencies and Difference more then anything else. It always makes for fun and a lot of awareness raising!

Now to the Serious Stuff: John Wayne (aka 'The Dook') is making his return.

The scene: TK Maxx in Weston super Mare, UK. Enter stage left a swaggering, steely-eyed tough guy on a mission to search for the Truth about 'Bargains'. Showdown with the store supervisor amidst a ferocious volley of red Clearance Price tickets in the shoe department.

JW to Supervisor (in characteristic, rolling cowboy drawl): 'Speak me the Trooth, and no Bull. I need these boots, cheap and quick'.

Result: I swagger away triumphantly with a cut-price pair of cowboy boots that don't fit me and I didn't need anyway (like all the other 'bargains' I've collected over the years). Better try the Bristol store next time?

I blame you (and others here who I will not name) for encouraging Escapism of whatever kind - so long as it's legal and harmless. Sometimes, it's how we cope best with adversity?

A quick turnaround tonight as I'm working again tomorrow (one strand of my professional work in between surviving PMR is delivering Public 'Speed Awareness' courses for / 'naughty speeders' in conjunction with the Police). Great fun, if challenging at times! But you meet all walks of society, and that's quite interesting.

Found this post helpful on my unpredictable PMR journey. Thanks. As a doer it’s hard to accept the fact that improvement is not linear. Trying to reduce to 14 mg has not been successful, back up to 15, still have symptoms so may have to increase again. Still struggle with pacing, monitoring help for my 94 yr. old mother, dating and waiting for the completion of the sale of my business.

Since I can’t make an appointment with Elizabeth Kubler-Ross, I’ll implement the wisdom and teachings of Mark Benjamin!

Thanks, not the usual funny stuff (!) but I thought it might be relevant to some of us here.

I've used this very broad / flexible Personality Type model a lot in my corporate work with Teams, Managers, Sales people etc and it's always well received. From experience, some of the better known Psychometric Profiling instruments out there can be a bit too analytical / rigid and leave people blinded by science rather than becoming more aware of themselves and the differences between people's styles (and the ensuing relationship dynamics).

I think Kubler Ross's model is very relevant to those of us with PMR / GCA since these types of illnesses really do present us with a massive Change Process, and I'm sure that learning to cope is helped by having a broad awareness of our likely emotional 'Journey' at the same time as enduring the physiological one..

I really like this post and all the responses. Don't know exactly where i fall in "types" as Bone Lazy in the first place" isn't a choice. It set me thinking about how I actually feel about the PMR and what is happening. I know this will change as time goes by as I am new to this...but I was wondering a bit how others feel about their PMR. And not only what you are doing physically with the meds and nutrition an exercise...but what you are doing mentally and emotionally. Right now I think of my PMR as being caused by a gathering of dolts (the system that forms my immune system) who are confused, lost, and inflamed and are bouncing off the walls and crashing around into each other. And they are honestly trying to straighten up and fly right but cannot. It isn't their fault; they were given too much to handle and have run amok with trying. So it is my job (along with all the help I can get) to get them working together again in harmony. So I just keep sending them good thoughts and good suggestions. And who knows, maybe it helps, maybe it doesn't, but it gives me something to do other than lying in bed with worry. I'd love any ideas. Thanks!!

As I always say, I'm not a qualified counsellor or psychotherapist but I'm convinced that examining our feelings and reactions (i.e. where they come from, and why) can help in managing and / or making sense of them with PMR / GCA - or any other major Life Change for that matter. And, of course, understanding our natural drivers and motivators (our broadly defined Personality Type) can help too. That said, Humans are complex beings and understanding Personality and Behaviour is far from an exact science (some would say, not scientific at all!).

I love your analogy / metaphor for the immune system! I think it can help some of us to 'humanise' PMR / GCA as having a personality of its own - and that we have a relationship with (albeit an unwelcome one!).

Not bad, all considered, yogabonnie After several months of trying to get from 10mgpd Pred to 6 (but with frequent Deathly Fatigue), I'm now down to 2.5 mgpd and about to reduce further - and with much less DF / less frequently as time goes on.

I know that for many of us at low levels of Pred, it seems like we're nearly at the Finish line. But from what I've learned here, the last bit of the PMR and / or Pred Journey can still be slow and frustrating since we are still catching up after a long term chronic illness - and which has a mind / timescale of its own!

I seem to be all of them especially the Doer and it’s hard. When I was a midwife and health visitor I used to say there was nothing worse than capable professional woman turned idiot mother. Worst was me, managing a ward full babies yet one screening thing of mine own that wouldn’t do what he was told was a nasty shock.

I suppose for me it’s about loosing the locus of control, my body determines what I do not me and I don’t like it. However I do have to recognise that compared to many I am still here and very lucky. The mantra I have adopted is that the anti dote to self pity is gratitude

Yes Edith, I think it's natural for us Humans to want to feel in control (locus of.. etc) regardless of our Personality Type - part of our survival mechanism maybe?

I agree with you, it can help to consider our illness in the Big Scheme of things and try to focus on what we still have / bring, rather than what we have lost? But, I know, easier said than done for some of us!